Do You Know About Monogenic Diabetes?

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This post was originally published on October 28, 2019 here on Hugging the Cactus. I decided to share it again today because I think it’s important to raise awareness that there are more than two types of diabetes. As I reread it, I realized that even someone like me, a person who has diabetes, still has a long way to go when it comes to understanding how each type differs from one another. Read on to learn more…

It was the statistic that impelled me to learn more information:

“Approximately 1 in 50 people with diabetes have monogenic diabetes.”

Mono-what?

I was staring at the giant banner bearing this statistic in the exhibition hall of the Friends for Life Falls Church conference. I read it a few times before I finally walked over to the table at which two women were seated. One of the women was an associate professor at the University of Maryland School of Medicine and a human geneticist. The other woman was a typical T1D for several decades of her life before she received a proper diagnosis of monogenic diabetes. Ever since that revelation rocked her world, she’d gone off insulin and took sulfonylureas (a type of drug that stimulates the pancreas to release insulin) to maintain healthy blood sugar levels.

Just how many types of diabetes are on the spectrum

Naturally, the whole concept was simultaneously foreign and fascinating to me. I wanted to know more.

As I discovered that evening, monogenic diabetes is best explained by its name. “Mono”, of course, meaning “one”, and “genic” meaning “relating to genes”. Therefore, it’s a type of diabetes that is caused by changes in a single gene.

Here are some “fast facts” that I learned about monogenic diabetes:

  • Most cases of it are misdiagnosed as type 1 or type 2 diabetes
  • Proper diagnosis of monogenic diabetes sometimes changes treatment from taking insulin to a pill, or no medications at all
  • There is an emerging clinical spectrum when it comes to genetic testing for diabetes. At the time of this writing, the following situations are when it’s recommended to undergo a genetic test to determine whether an individual has monogenic diabetes:
    • The individual received a diabetes diagnosis within the first 6 months of life
    • The individual’s diabetes does not follow typical characteristics of type 1 or type 2 diabetes – this might mean that the individual is non-obese or has a strong family history of diabetes
    • The individual has a stable fasting blood glucose between 100 and 150 mg/dL
  • From the pamphlet I picked up that featured stories from individuals with monogenic diabetes: “I was 21, taking metformin and aspirin daily and sitting in a type 2 diabetes class with three much older participants. Despite dropping my BMI from 26 to 23 my A1c had risen to 6.4%, not a high number, but certainly one worth watching. I knew of no one else in my family with diabetes. Eventually I did get that dreaded diagnosis, and because it didn’t seem to be type 1, they said it was type 2. Fast forward 2 years and my sister now had ‘GDM,’ (gestational diabetes mellitus) twice, my dad finally admitted to having ‘borderline sugars’ since he was in college, and I got my genetic results back saying I had GCK-MODY (GCK being a gene that can have a variant that triggers monogenic diabetes, MODY being maturity onset diabetes of the young). It changed everything: gone were the pills, gone was the restrictive diet and exercise plan, and when my son was born with high blood sugars, we did nothing, because he was like me, and there is nothing that needed doing.”

Now, if YOU are like ME, all of that might read like some mumbo-jumbo. It took a few weeks of me reflecting on it to decide whether I should even write this post, because I feared that it might cause some people to be paranoid about whether or not they were misdiagnosed with their diabetes (I admit that I was worried about that for myself in the days after learning about monogenic diabetes).

But the big takeaway here that I thought should be captured in a blog post is that it’s important for patients to advocate for themselves when things just don’t add up. There were a few more stories from individuals with monogenic diabetes in the pamphlet I got, and there was a recurring theme in all of them: Doctors kept telling these patients that their diabetes was atypical, but it wasn’t until these patients sought genetic counseling that they began to understand why.

It goes back to what I said at the beginning of this blog post: I find this variant of diabetes to be intriguing. It makes me wonder whether we should continue to define diabetes in such a black-and-white manner (either you have type 1 or type 2). I’m curious if diabetes is more of a spectrum of diseases that present similar symptoms, but require different levels of treatment and management. It’s certainly interesting food for thought, and considering that diabetes continues to be a semi-mystifying condition to many researchers and doctors, it won’t surprise me if future studies eventually uncover more types of diabetes.

Anyways, enough of my musings on genetic testing and speculations on how many types of diabetes are really out there. If you’d like to know more about monogenic diabetes, I was guided to several different resources. Check them out below:

How I Realized I’m Experiencing a Bout of Diabetes Burnout

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Diabetes burnout is the generic term used to describe a state in which a person with diabetes becomes tired of managing it and may become neglectful of one or more aspect of diabetes care.

I say “generic term” because diabetes burnout doesn’t look the same for every person, though, so it can be tough to recognize it when it’s happening. I know this from personal experience: I’m going through a bout of diabetes burnout right now.

Diabetes burnout is just a part of having T1D.

It took me weeks to realize it, but I finally came to the conclusion that I was burnt out because several things dawned on me at once:

  • It was taking me longer to respond to CGM alarms. I would hear them going off, but I didn’t necessarily care to even look at them, let alone correct them. As a result, I let a lot of high blood sugars linger much longer than I should have, which made me feel frustrated and bad about myself for causing harm to my body.
  • I wasn’t eating healthy foods. The Easter holiday brought an abundance of chocolates and sweets into my kitchen, so instead of choosing fruits or veggies to snack on, I was going for high-carb items with zero nutritional value…and I didn’t bother bolusing for them, which of course, wreaked havoc on my blood sugar.
  • I did the bare minimum to keep my blood sugars in check. I was still bolusing for all my meals, but the snacks in between? The little desserts I’d have? The alcoholic beverages I’d enjoy? Nope, certainly wasn’t taking those into account when I took mealtime boluses.
  • I got lazy with carb counting. I kept gravitating toward bottomless bags of snacks when I did my weekly grocery store trips, even though I knew that I have no restraint when it comes to highly addictive, faux-healthy foods like Annie’s cheddar snack mix or cute little teddy graham cookies. Whenever I’d crack open a fresh box or bag, I’d dig in and wouldn’t stop digging in, going way over the recommended serving sizes and not bothering to slow down and count out my carbs.
  • I was allowing my emotions to influence my diabetes care (or lack thereof). I’m a self-professed emotional eater. That, coupled with excess stress/anxiety levels, shifted my attention away from my diabetes.

So, yeah, there’s no question that I’m in a period of diabetes burnout. Joy.

As tired as I am of taking care of my diabetes, though, it doesn’t compare to how exhausted it makes me to beat myself up over my burnout day after day.

I’ve been through burnout before. I know I’ll make it through, just like I have in the past, and I am also aware that I’m likely to experience it again in the future. And rather than come up with a super-specific action plan to conquer it, or give myself a timeline to overcome it, I’m just going to ride it out knowing that I’m trying my best each and every day, and that’s what matters most.

Type 1 Diabetes, Disability and the Role of Legislation in Advocacy – A Post by Pramita Jasuja

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This is a post by Pramita Jasuja that was originally published on the T1International blog on April 9, 2021. I am sharing it here today because I thought it was an interesting take on how type 1 diabetes is (or in this case, is not) recognized in another country. Thank you to Pramita for sharing her story and explaining the importance of legislation in advocating for people with diabetes.

Every new type 1 diabetes (T1D) diagnosis can be intimidating, both for the person and the family members. Many people with T1D are told they should be able to live a “normal” life and that they can do everything that a person without diabetes can do.

As a newly diagnosed child with blood sugar levels of over 570mg/dl, all that was on my mind was T1D. But a year post-diagnosis, when daily needles became the new normal, I was told by my family that I was completely fine and that there “was no need to tell anyone” about my medical condition. “I am normal” was stuck in my mind and I took it very seriously. So much so, when my endocrinologist asked me as the “patient” to sit near her chair, I replied: “I am not a Patient.” Both my parents and the endo smiled.

It’s been 7 years since that incident and I now reflect on my statement, especially over the word “normal”. Calling yourself “disabled” can have negative connotations attached to it. People often refrain from using that word, as if living with a disability is abnormal. Though if we do this, we deny a part of us. When it comes to legalities, the word “disability” is significant. Disability legislation considers people living with disabilities as subjects who possess rights capable of claiming that they have a disability – not those simply given charitable treatment. This was spelled out in the UN Convention on the Rights of People with Disabilities (CRPD), the human rights convention that hit the highest number of signatories.

I live in India. It’s one of the countries that has ratified this convention, but it’s also a country where myths and stigma overtake the real issues. A report by WHO found that in low-income countries where superstitions surrounding diabetes are common, the fatality rate is high. India is no exception. Due to a lack of proper health care facilities and a lack of national registry exclusively for T1Ds, children in the country are facing late diagnosis and even death. Considering the level of poverty in the country, blood test strips and continuous glucose monitors (CGMS) should be subsidized. Unfortunately, that is not the case. People with T1D are rationing them, which makes diabetes management challenging. Plus high blood sugar levels and/or ketones hinder the ability to perform “normal” day to day activities.

Insulin is like water. Someone with T1D can not live without it, but medical insurance in India does not cover it, and not every type of insulin is subsidized. So for those with T1D and financial struggles, there are the worries about the price of life-giving insulin and medical supplies.

After considering these facts, let’s look at the definition of “person with a disability” under the Rights of People with Disabilities Act (RPWD) 2016 that was enacted after India ratified CRPWD: “a person with long term physical, mental, intellectual, or sensory impairment which, in interaction with barriers, hinders his full and effective participation in society equally with others.”

“When it comes to legalities, the word “disability” is significant. Disability legislation considers people living with disabilities as subjects who possess rights capable of claiming that they have a disability – not those simply given charitable treatment.”

The sad part, however, is that T1D is not considered a disability under this Act, even though the current problems faced by people with T1D in India do “hinder (their) full and effective participation in society equally with others”. I’m arguing that you can not tell every T1D to live “normally” when the condition doesn’t always allow for it. The community is suffering silently and legislative action is being denied.

It is through the recognition of injustices and assertion of our rights that we can ensure equal opportunities. T1D advocacy is emerging in India and as a collective we are highlighting these issues. Change is happening. In 2020 in Kerala High Court, a public interest litigation was filed over the issue of including T1D in the list of disabilities and creating a national registry for people with T1D. This step is important. Recognition of T1D as a “disability” would obligate the government to fulfill what is laid down in the Act, for example providing affordable and accessible health care, ensuring the implementation of non-discrimination clauses and creating special faculties at educational institutions.

Seven years after that endo visit incident, even though I will never be able to deny that I am a patient, what I can do is advocate for patient rights. At a macro level this means standing up for the community. Recognition under the legislation of people with diabetes as those with disabilities is the first step, a chapter in the book of advocacy in my country of India.

When Carbs Collide with a Bent Cannula, Chaos Ensues

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Sushi. Wine. Not one, but two slices (I swear they were slivers, honest) of cake. A pod with a cannula that got bent out of shape accidentally due to clumsiness.

The above sounds like some sort of weird laundry list, but it’s really just all the factors that contributed to a night of high blood sugars and relative sleeplessness.

Let me explain what happened: The night started out fabulously! I got sushi for dinner from a local spot that I was trying for the first time. I was excited about it because sushi is a rare treat for me, and I figured the occasion warranted some wine – my first glass(es) that I’ve had in about 2 months (I gave it up for Lent).

Those two things right there are definitely a “dangerous” duo that can cause carbohydrate calculation errors or prolonged blood sugars, but I tucked that in the back of my mind because I wasn’t done with indulgences for the evening.

I want to say I regret nothing about this carb-o-licious evening, but…

That’s right, I kept up with the carb-loading by enjoying some cake (white chocolate blueberry cake that I made myself that is just as decadent as it sounds) soon after dinner was done. My problem is that I thought I’d curbed the impact of the carbs by setting a temporary basal increase and stacking a small amount of my insulin, but no such luck. I’d destroyed my second piece (it was just a tiny sliver, people) and noticed that I was creeping up. I took more insulin and soon forgot about my high blood sugar as I immersed myself in episode after episode of Impractical Jokers, which, side note: It’s a series I just discovered and it’s hilarious cringe comedy that is the perfect thing to watch after a long day.

A handful of episodes later, it was time for bed. Or so I thought…because soon after I was settled in bed, I twisted around in just the right – or in this case, wrong – manner that was rough enough to loosen my pod from its allegedly secure location on my back. The smell of insulin was pungent and indicated to me immediately that the pod would have to be ripped off completely and replaced. And the sooner, the better, because my blood sugar was getting closer and closer to 300…definitely not a level I want to see before I go to sleep.

By 12:30 A.M., the new pod was on my arm and a temp basal increase was running to combat my lingering high blood sugar. I also gave myself yet another bolus and crossed my fingers, hoping that the combination would be enough to bring my levels down overnight.

At around 2 A.M., my PDM started beeping to let me know that it’d been about 90 minutes since the new pod was activated, so in response I woke up to silence it and glance at my CGM. My blood sugar barely budged! Frustrated, I gave myself more insulin and fell back into a restless sleep.

Several hours later, my alarm was blaring, far sooner than I wanted it to. I hit the snooze button, also taking care to check out my CGM yet again before I made an attempt at 15 more minutes of sleep. And guess what – I was still high. Quite high. Not 300, but in the mid-200s.

It was official: My blood sugar was punishing me for my night of careless carb consumption and reckless pod-handling. I shouldn’t have been surprised by the resulting chaos, but at least I was able to restore peace again the next morning…eventually.

4 Tips on How to Handle T1D, Treats, and Temptation

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If you regularly read this blog, then you know that I’m not a strict person with diabetes, in the sense that I don’t really restrict the foods that I include in my diet.

I’ve always been of the mindset that my diabetes can’t dictate what I choose to consume, though it might limit the actual quantity of a given food type that I eat.

So while my fridge and freezer is almost always stocked with fresh and frozen fruits/veggies/proteins, my pantry often stores more shelf-stable (and usually less healthy) things like crackers, cookies, and even candy. In fact, a full week post-Easter, my cabinets contain 3 bags of jellybeans, a chocolate bunny, and several Reese’s eggs. And it’s very tempting to reach into the cupboards and help myself to as much sugary sweetness as I can stomach in one sitting – screw my diabetes/blood sugar, I’ve got delectable confections to consume!

I don’t even like jelly beans very much, but that doesn’t mean that I doubt my ability to crush this bag in one sitting…

But of course, I know that indulging my cravings will only wreak havoc on my blood sugar levels, so I’ve found a few ways to curb temptation but still keep tasty treats in my home. Here’s 4 things that have worked for me:

  1. Only eat these treats when my blood sugar is low. I call this “medically necessary” candy consumption, and let me tell you, it makes low blood sugars a whole lot more tolerable when they’re treated with something that’s more fun and yummier than chalky glucose tablets or juice boxes.
  2. Keep them out of sight. I do my best to shove bags of treats in the very back of my top cabinets. That way, if I’m tempted to dig into them, I remember that I won’t be able to reach them unless I get a chair and rummage through the contents of the top shelves…and usually, that’s enough to take away my desire to snack on something sugary. I’m not saying it always happens, but laziness will typically beat my sweet tooth.
  3. Pre-portion single servings of treats. I have a real problem with snacks that come in bottomless bags – it’s hard to know when to stop and my blood sugar always suffers the consequences. So I like to study the serving size on bags and use it as a guide to portion out single servings of treats. It’s much easier to bolus for whatever it may be (or treat a low blood sugar as described in tip #1) when I know the exact carbohydrate count; after all, a few handfuls of an unknown number of Skittles have far more carbs than a single serving of 15 Skittles.
  4. Be picky about the types of treats kept in the house. My kryptonite is most definitely Reese’s cups…I love the salty/sweet combination of peanut butter and chocolate almost as much as I love my dog. So I recognized that a bad habit was forming when I kept a little bowl out in my living room filled to the brim with mini cups. I was breaking every single one of the above rules with this practice! After I realized this, I put the bowl away and stopped buying Reese’s every time I went to the grocery store. I still have other things around the house that will satisfy my sweet tooth (before Easter, I bought a package of dark chocolate Oreos that I’ve easily kept around for the last 6 weeks because they don’t tempt me in the same way that Reese’s cups do), so I’m really not depriving myself at all.

Temptation can be tricky to navigate when you have T1Ds and love sugary treats as much as I do…but as long as you can come up with ways to cope with temptation like I did, then you don’t have to feel guilty for giving in to your cravings every now and then. I sure don’t!

The Forgotten Bolus

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My friends and family have always complimented me for having a good memory.

What can I say? I have a knack for remembering names and faces. I’m slightly better than decent at keeping track of birthdays. And I’ve kept journals of some sort for most of my life, so I’m usually able to recall the date on which a certain event took place (or I can at least look it up fairly quickly).

But my memory can fail me sometimes, and it did just that the other day when I forgot to bolus for dinner.

I don’t think I’ve ever forgotten a mealtime bolus in more than 23 years of life with diabetes. I suppose there’s a first time for everything…

To give myself a little credit, I truly thought that I had bolused. I remembered picking up my PDM and entering my blood sugar and carbohydrate information, but I never actually hit the very important “enter” button that would start delivering my insulin.

Imagine my surprise, then, when I saw my blood sugar rapidly rising – I’m talking double “up” arrows here – approximately 20 minutes after I finished my dinner.

And at first, I decided to ignore it! I thought that my insulin just needed a little more time to kick in, so I waited. And waited. And waited. But when I saw that I was rising above 250 mg/dL, I figured I should increase my temp basal…perhaps my body just needed a bit more insulin than I anticipated.

That’s when I picked up my PDM and saw that I had zero units of insulin on board. Extreme confusion turned into extreme panic as I asked my mom if I could check her PDM – what if I had picked hers up instead when I bolused for dinner and mistakenly gave her the insulin that was intended for me?!

Thankfully, that wasn’t the case, and I slowly began to piece together that I simply forgot to hit the bolus delivery button.

Whoops.

Almost one full hour after finishing my meal, I was finally delivering my mealtime bolus and silently fuming over my high blood sugar that ended up lasting several hours. It was a completely avoidable situation that shouldn’t have happened, but at least one good thing came out of it: I don’t think I’ll be forgetting to bolus any time soon.

Ketones Strips: To Buy or Not To Buy?

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I popped into a CVS store on my way home from picking up groceries to pick up something very important…Starburst jellybeans, because naturally, I “needed” them.

When I was in the store, I wandered over to the diabetes aisle, curious to see if browsing the shelves would remind me of any supplies I should pick up.

My eyes fell on a box of ketones testing strips and I paused, pondering whether or not it was worth it to buy them.

Are ketones testing strips a must-have or no-need item for you?

I admit that I scarcely ever check my ketones when my blood sugar is above 250. I know that I should, but a combination of laziness, anxiety, and lack of unexpired strips usually stops me from checking. And when I do have strips on hand that aren’t expired, it seems that I’m only able to use a couple out of the 25+ strip bottle before the whole dang thing expires, which is frustrating. In fact, prior to this CVS trip, I had a vial of ketones strips sitting in my bathroom that expired more than 4 months ago. I hadn’t trashed them yet because I stubbornly hang onto things far longer than I should.

So I stood in that CVS aisle, my hand hovering out in front of me over that box containing the ketones strips. To buy or not to buy? Do I spend the money knowing that I’ll probably only use a few strips? Or do I save the approximately $12 and walk out the store knowing that I don’t have useable strips at home?

Ultimately, I bit the bullet and bought the strips. I know myself well enough to know that I’ll take comfort in knowing that they’re available to me if and when I decide to use them. Besides, $12 is a fairly small ask when it comes to monitoring something as important as this and granting myself peace of mind.

If only we could have a price like that for life-saving insulin…

Insulin is a Right for Incarcerated People with Diabetes – A Post by Elana Megerian

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This article was written by Elana Megerian and it was originally published on March 24, 2021 on the T1International blog. I’m re-posting it here today because, quite frankly, I found it disturbing. I had no idea that safely navigating encounters with law enforcement was a problem for the diabetes community. I can also admit that I made assumptions based on the headline of this article, but decided to stick with it only to discover that my assumptions were wrong and that the criminalization of diabetes symptoms is a real issue. If you have any doubts about this article, I encourage you to read the full piece so you can understand what’s going on and the steps that should be taken to address it.

When widespread Black Lives Matter protests erupted in the summer of 2020, the diabetes online community began crowdsourcing ideas about how to safely participate. Concerns grew in response to an incident in which police confiscated the supply bag of a protestor with type 1 diabetes, despite her consenting to a search and communicating her need for glucose.

A viral video of the encounter revealed another pressing need of the diabetes community: how to safely navigate encounters with law enforcement. This led me down a rabbit hole that heightened my alarm as I found story after story of police and prisons withholding insulin.

In 2013, footage from Rikers showed Carlos Mercado repeatedly vomiting, fainting, and displaying signs of severe illness in the presence of corrections officers. At age 45, he died after having his insulin withheld for 15 hours.

In 2014, William Joel Dixon was found dead in his cell after his insulin was withheld for seven days. Records show that his blood sugar was only checked once during that week. He was 28 years old.

In 2015, Michael Robinson died after being put in solitary confinement in response to his pleas for insulin. He was 33.

In 2016, Morgan Angerbauer’s death in an Arkansas jail cell was caught on video. Records show that she had been calling out for help, but was ignored. She received no insulin for 23 hours, and her requests for blood glucose checks had been denied. She was only 20 years old.

In all these situations, staff were aware that the victims required insulin to live. In all the cases, insulin was withheld long enough to induce diabetic ketoacidosis, a potentially fatal complication that usually occurs in people with type 1 diabetes who do not have regular access to insulin. It is a torturous and almostly completely preventable cause of death, yet it is far too common in US prisons. Since 2008, at least 12 such deaths related to withholding insulin have occurred in the state of Georgia alone.

Insulin is a Right for Incarcerated People with Diabetes
“#insulin4all is more than a hashtag: It is a rallying call to everyone impacted by insulin inaccessibility, and a mournful cry for all who have lost their lives while insulin remains clearly in view, but cruelly out of reach.”

Diabetes symptoms have also often been criminalized. In August 2020, Max Johnson, a black man with type 1 diabetes who was having a seizure due to hypoglycemia, was dosed with ketamine by police and Emergency Medical Services (EMS) after his girlfriend called them for help. The same drug that killed Elijah McClain, ketamine was reportedly delivered to Johnson at such a high dose that it rendered him unable to breathe and led to a two-day stay in the ICU. The American Diabetes Association has documented many other cases in which people were denied insulin, or had their diabetes symptoms treated like criminal behavior by police.

Having insulin withheld or having diabetes symptoms criminalized is obviously seriously dangerous, especially for Black Americans who are both more likely to have diabetes and more likely to have violent encounters with police.

These instances flagrantly defy the 8th and 14th amendments of the United States, which protect the right to adequate medical care for incarcerated people as well as those in police custody. Since the law is unequivocal, it is distressing that violations are commonly committed by the very individuals and systems meant to enforce it.

One factor perpetuating this is the lack of recourse for victims and their families. It’s hard to successfully bring a case against the police or a prison. Even if such a case is won, it doesn’t bring back a lost life, reverse damage from chronic hyperglycemia, or ease the trauma of being brutalized by those called in to help you through a medical crisis.

So what can be done? Standards of ethical behavior need to be raised for police, EMS, and corrections officers. Given how common the condition is among incarcerated individuals, anyone working with this population should be educated about diabetes, its basic management, and the signs of acute crisis. Deaths due to subpar medical care aren’t rare occurrences. Chronic illnesses are the leading cause of death in US prisons and are probably frequently covered up.

This disproportionately impacts Black Americans, who have higher rates of incarceration, diabetes, and diabetes-related complications compared to their white counterparts. Diabetes is too often a death sentence in the prison setting. Advocacy for prison reform is urgent.

It is time to recognize that incarcerated people with diabetes are particularly vulnerable to insulin insecurity. #insulin4all is more than a hashtag: It is a rallying call to everyone impacted by insulin inaccessibility, and a mournful cry for all who have lost their lives while insulin remains clearly in view, but cruelly out of reach. It’s a demand for justice for everyone who needs insulin to survive, including incarcerated people with diabetes. We must find ways to meaningfully include and involve this population in our activism.

How My T1D and I Handled My First COVID Vaccine

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Imagine my surprise when I went to write about today’s new blog post on my Instagram account and swiftly realized…I didn’t have a new post! Life’s busy and as a result, I’ve fallen a bit behind my blogging schedule.

Luckily, I have the day off from work today, so I’m able to whip up a quick post on something that people might be wondering about: How did my diabetes and I fare after receiving dose 1 of 2 of a COVID vaccine?

I am officially halfway there on the vaccine front.

I’m going to rapid-fire this one and sum it all up with some bullet points:

  • I got the Moderna vaccine
  • I felt 0 pain when I was injected – in fact, I didn’t feel anything and was surprised when the nurse told me I was all set
  • I had to wait 15 minutes after the dose was administered to make sure I didn’t experience any type of reaction
  • I had no reaction whatsoever
  • About 18 hours after I got the vaccine, I noticed some slight pain around the site
  • I could not see any marks around the site – no redness, no apparent injection location
  • The pain was only noticeable when I was changing my clothes
  • My blood sugar within the first 24 hours was mostly fine (I wasn’t eating super healthy so any high blood sugars can be blamed on my poor diet)
  • My blood sugar was fine 48 hours later, leading me to believe that the vaccine had 0 impact on my blood sugar levels (I had somewhat anticipated elevated blood sugar levels because my mother, who also got the Moderna vaccine, said her levels were higher 2-3 days later post-vaccine)
  • I felt absolutely normal! I got the vaccine three full days ago as of this writing and I can’t say that I’ve noticed anything different

That was my experience; remember, all people with diabetes (and without diabetes) are different and may experience different things. If you have any questions after reading this post, I highly recommend reading this post from Beyond Type 1 that tells you what you want to know about the vaccines. And here’s my little disclaimer to talk to your doctor about any concerns you have.

I’m glad that I got my first vaccine and that it was a hassle- and pain-free experience. I’m looking forward to getting dose number 2 at the end of April and will be sure to recap what it’s like then. In the meantime, I’m happy to continue masking up and practicing social distancing – after all, we’re in this together, and just because I got one vaccine doesn’t mean that I can’t do my part to help protect others.

T1D and Trolls (Literal and Figurative)

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Let’s talk about trolls.

No, not the cute ones from the 90s with the gems stuck in their bellybuttons and wild, vibrant hair.

I’m talking about two specific types: Internet trolls and in-real-life (IRL) trolls.

They’re not my favorite kind of people, I’m betting you’re not a fan of them, either.

This is what T1D trolls look like in my (admittedly strange) imagination.

I can’t tell you how many times trolls have made their presence known on my Instagram posts. It always goes a little something like this: I post a photo to my account and within 10 minutes, I’ve got some sort of comment on it that goes a little something like this (the following is an actual comment I got last week):

Just wanted to let you know that truly what people are posting about DIABETESTYPE1 cure is true. I write one of the doctors and got herbal medicine from him and truly I’m cured from DIABETESTYPE1. It’s real. Message the doc @herbalist.ebho

There are so many things obviously wrong with this comment that I almost don’t want to deign to explain it, but let’s go over them real quick. 1) Diabetes can’t be cured from freakin’ herbs. 2) No matter how many times someone puts “truly” into a comment, it doesn’t make it TRUE! 3) Why on earth does this person think I’d want to seek help from some random Instagram doctor that probably isn’t even a real doctor? And 4) Obviously, this person – or bot, because I’m sure it’s a bot account – is simply plugging type 1 diabetes into this comment. I can only imagine how many other accounts it trolls that focus on various other chronic conditions…

I deal with most of these comments by deleting and/or reporting them immediately, but this time, I decided to respond to the claims that some generic herbs could cure my diabetes. This is what I said:

“Oh yeah? Is it? Wow I can’t believe I never thought to message some random person to get cured from T1D! Thanks for your completely inaccurate message and typos, have a nice life! 🙂

And of course, I never got a reply…because that’s how trolls operate.

But what to do when trolls come creepin’ into real life?

You know, the people who tell you that their distant relative cured their diabetes by consuming cinnamon? Or the people who assume that you caused your diabetes by eating too much sugar?

I wish there was a delete/report option for those comments, but instead, I try to turn them into educational opportunities. My initial approach is always gentle when I explain that these myths are not only incorrect, but they increase the stigma and misunderstanding of type 1 diabetes. More often than not, trolls turn into apologetic students who walk away with the facts…but every now and then, you encounter a stubborn one who just doesn’t seem to get it.

As frustrating as that can be, it’s okay. Trolls are gonna troll and you can’t always slow their roll (ugh, I know that was lame, please forgive me). So even though I feel like I’m going to hit the roof if I see one more stupid troll comment on my IG posts or encounter one other troll spewing diabetes myths, I can take solace in knowing that I can take back control of the comments by explaining why they’re wrong or (more satisfyingly) removing them altogether.